The problem with DLA is that you have to paint the worst picture possible of your child - picking out all the bad points and none of the good. This is VERY hard to do!
I would appeal - most of the penpushers who make the crucial decisions have no idea what its like to live with a child with SEN.

jambuttie, does your ds have a gdd diagnosis, my ds4 has diagnosis of gdd with hypermobile joints, but in my opinion ticks lots of boxes for dyspraxia, we have just been awarded mid rate dla for the 2nd time, lost his mobility this time but he isnt 5 till next feb, i guess i am much luckier than some, defo go all the way to appeal though hun, and get as much back up as you can, inundate them with letters if need be, good luck.

Ok so this morning the postie has brought to me the Tribunal papers which I have to fill in and return within 14 days!!!

On reading the reports on why he was refused, they have said he has been refused highest rate mobility(never asked for hi rate) because although he has difficulties and needs supervision it doesn't warrant an award.

The doctors report was from a consultant who has seen him ONCE at the hospital and this was his appointment when he went about his "Blank episodes".

I had written to them asking for reconsideration stating the following

DS1 is much slower at walking than children his own age and struggles to run. If he walk a distance he is in severe pain and discomfort and becomes very distressed.

He is frequently awake in the night in pain and discomfort in his legs and needs much comforting to calm/destress and resettle.

He is unable to ride a bike(he has little to none power in his legs) unlike kids his own age, can't cut out pictures- cant use scissors, cant catch a ball if thrown to him- doesnt then get "picked" for certain games by his piers

Standing/walking for long periods causes him pain/discomfort.

washing and dressing- he needs lots of encouragement and gets angry at himself at not being abke to manage alone,

he takes MUCH longer to eat a meal and tends to use his fingers cause he finds cutlery difficult( we also have care cutlery in the house)

He's unsteady on his feet, balance poor falls over frequently bumps into things more than kids his own age.

So do you agree that it doesnt warrant an award? I dont have the energy to appeal this. but dont want to give up the fight for my son either

My dd recently got DLA because of her mobility difficulties and extraordinary hypermobility in her joints. She has the same problems that you mentioned about your ds. I think the only difference between her and your ds is that my dd also has a heart condition and unstable vision.

Sadly, I think that if it was just the joints/pain issues that she probably wouldn't have got DLA. Her claim was refused the 1st time... the DWP had approached the wrong physio that had only seen her when she was a baby, so he couldn't help. The GP's report was lacking several key points, and suggested that dd's mobility problems were fixed with her wearing Piedro boots. He didn't even mention that she has to use a Maclaren Major buggy (which I collected from wheelchair services on the day the DLA claim was turned down). Her other consultants had some policy of not giving info to the DWP

I just asked them to look at the information again, and she was awarded high rate mobility and middle rate care.

Good luck with the tribunal, although you should not have to go through this

Jambuttie You should appeal, ikwym about being able to face it tho - do you have a pro DLA professional on your side, I think it can make all the difference if they can summarise your ds's difficulties using the buzz words the DLA need to hear to tick enough boxes for an award.

I've just received the pack for DS2's renewal, so I imagine i'll be on here moaning about the B**stard DWP before you know it.